What's New with USH, June 2016

June 28, 2016


MESSAGE FROM THE CHAIRMAN

My apologies to anyone who wished to attend the 2016 Usher Syndrome Family Conference in Seattle but has not yet registered. At nearly 200 people, we are sold out and can no longer accept any other registrants. On the one hand, it saddens us to have to turn away members of the Usher syndrome community. We never want to deny anyone in the Usher syndrome community an opportunity to gain knowledge and network with researchers and other families. On the other hand, we should all celebrate this because it is a GREAT problem to have. We are becoming a community that is bursting at the seams, demanding more opportunities, speaking with an ever larger chorus of voices.

A large active community is a tremendous asset. Community is the only way to combat the social isolation often associated with Usher syndrome. An active community is necessary to push for governmental investment in science. And, as we often note, a large community is critical, absolutely critical, to finding treatments for Usher syndrome. There will be no treatments without clinical trials. There will be no clinical trials without enough Usher syndrome families to participate as candidates. We need everyone to be involved.

Every year we seem to move closer to that goal. So I am both sorry and very, very happy that the family conference sold out. Next year, in Chicago, we'll be sure to have enough room to welcome everyone. Unless, of course, this community once again exceeds all expectations.

Mark Dunning


THANK YOU TO HILL+KNOWLTON

At the 8th Annual Usher Syndrome Family Conference the Foresight Award will be presented to Hill+Knowlton Strategies, a global public relations firm. H+K has provided substantial support to the Usher Syndrome Coalition for the past three years. This support has raised public awareness about Usher syndrome and also has taken the Coalition to a higher level. With the presentation of the Foresight Award, we express our sincere appreciation for their partnership in providing support to hundreds of thousands of individuals with Usher syndrome.


SAVE THE DATES

SAME EVENT, NEW NAME

Starting next year, the Usher Syndrome Family Conference will have a new name:

USH Connections Conference

USH2017: 9th ANNUAL USH CONNECTIONS CONFERENCE | JULY 15, 2017 | CHICAGO, ILLINOIS

This one-day annual conference is the largest gathering in the Usher syndrome community. It's also an incredible opportunity to learn the latest on the developing treatments for USH from leading researchers, while connecting with others in your USH family.

USH2018: INTERNATIONAL SYMPOSIUM ON USHER SYNDROME and the 10th ANNUAL USH CONNECTIONS CONFERENCE | JULY 19-21, 2018 | MAINZ, GERMANY 

This will be a two-day international research symposium, held in conjunction with our one-day annual USH Connections (Family) Conference.

The two-day Symposium on July 19th and 20th will be a scientific forum where the world's leading experts come together in an environment that encourages collaboration and the exchange of ideas in order to advance Usher syndrome research.

The USH Connections Conference on July 21st is an opportunity to learn about the latest research and news, and to connect with researchers, other Usher individuals and families.


GET GENETIC TESTING

UNRAVELING USH: AN USHER SYNDROME GENETIC TESTING INITIATIVE

Unraveling USH is a collaborative effort between the Usher Syndrome Coalition and the Stephen A. Wynn Institute for Vision Research at the University of Iowa to ensure everyone with Usher syndrome has access to genetic testing. Unraveling USH seeks to provide guidance and affordable testing to people who have been unable to get genetic testing in the past, either due to lack of access or financial barriers. This initiative will help to fulfill the Usher Syndrome Coalition's goal to identify everyone with Usher syndrome worldwide, while offering state-of-the-art genetic testing through the John and Marcia Carver Nonprofit Genetic Testing Laboratory at the University of Iowa.

Learn more about how to participate and visit our Q&A page to learn about the importance of genetic testing and other frequently asked questions.


JOIN THE USH TRUST, THE LARGEST INTERNATIONAL USHER SYNDROME REGISTRY IN THE WORLD.

Usher syndrome is the most common genetic cause of combined deafness and blindness. The Usher Syndrome Coalition is the only organization in the world seeking to identify and support individuals with Usher syndrome and their families.

People with Usher syndrome have told us they want information, treatment and a cure. Researchers have the same goals. Yet the biggest challenge we face is connecting these two communities.

Of the estimated 400,000 people worldwide living with Usher syndrome, the research community is in touch with less than 1%.

We are working hard to change that.

The Usher Syndrome Coalition has created three valuable resources to address these needs:

  1. USH Trust (formerly known as the International Usher Syndrome Registry) – A confidential, simple and secure place for everyone with Usher syndrome to sign up, be connected, be informed and be involved. By being part of the USH Trust, you will be the first to know about clinical trials. Click here to join the USH Trust.
  2. USH Blue Book (formerly known as the Family Network) – connecting individuals with Usher syndrome, family members, friends and others in a global network of support. Click here to join the Blue Book.
  3. USH Yellow Book – a centralized directory of USH researchers and resources worldwide. Click here to view the USH Yellow Book.

Learn more: In MediaPlanet's latest Vision & Hearing campaign, Nancy O'Donnell, director of the USH Trust, reminds us of the importance of being recognized as someone with - or a parent of a child with - Usher syndrome.

You can learn more about Nancy in her blog post, Calling all Experts, also available as a signed vlog on our YouTube channel.

Nancy can be reached at n.odonnell@usher-syndrome.org, Voice:1-855-998-7437, option 1 or Videophone: 1-631-533-9621.

 

 


HELP GAIN VISIBILITY FOR USHER SYNDROME

Will you take just 3 minutes and tell others about your experience with the Usher Syndrome Coalition?  By reviewing us and explaining how the Coalition has had a positive affect on your life, you are helping Usher syndrome get the attention it deserves.

Please share your experience at: 

greatnonprofits.org/org/usher-syndrome-coalition

Thank you in advance. Together, we will make Usher syndrome history!


RECENT USHER SYNDROME BLOG POSTS

Sold Out! | June 23, 2016 by Mark Dunning

We should all celebrate this because it is a GREAT problem to have. We are becoming a community that is bursting at the seams, demanding more opportunities, speaking with an ever larger chorus of voices. Read more...

Dark or Light | May 17, 2016 by Moira M. Shea

Moira Shea, the Vice Chair of the Usher Syndrome Coalition, writes about how she came to her "a-ha" moment while living with Usher syndrome. Read more...

Words | May 9, 2016 by Kate Morell

"Words can be connection. Words can be powerful. Words can be healing." Kate shares her words with us. Read more...

The Importance of Genetic Testing | April 6, 2016 by Susie Trotochaud 

The key to advancing research into treatments for Usher syndrome is community. Not just a community, but a genetically-diagnosed and accessible community. Read more..

CLICK HERE TO READ OLDER USH BLOG POSTS 

 


LATEST RESEARCH NEWS

The Protein E3 Ligase Ubr3 Regulates Usher Syndrome and MYH9 Disorder Proteins in the Auditory Organs of Fruit Flies and Mammals | General Research News | Published: June 22, 2016

Tongchao Li, Nikolaos Giagtzoglou, Dan Eberl, Sonal Nagarkar-Jaiswal, Tiantian Cai, Dorothea Godt, Andrew K Groves, Hugo J Bellen.

"Myosins play essential roles in the development and function of auditory organs and multiple myosin genes are associated with hereditary forms of deafness. Our work reveals a novel mechanism that regulates protein complexes affected in two forms of syndromic deafness and suggests a molecular function for Myosin IIa in auditory organs." Read more...

First Small Molecule Targeted Therapy to Mitigate Hearing Loss in Usher Syndrome Type 3 | Drug Based Therapy News | Published: April 25, 2016

Kumar N Alagramam, Suhasini R Gopal, Ruishuang Geng, Daniel H-C Chen, Ina Nemet, Richard Lee, Guilian Tian, Masaru Miyagi, Karine F Malagu, Christopher J Lock, William R K Esmieu, Andrew P Owens, Nicola A Lindsay, Krista Ouwehand, Faywell Albertus, David F Fischer, Roland W Bürli, Angus M MacLeod, William E Harte, Krzysztof Palczewski & Yoshikazu Imanishi. 

A new study published in Nature Chemical Biology reports the first small molecule targeted therapy for progressive hearing loss in a mouse model of USH3, an USH classified by progressive loss of hearing and vision starting in the first few decades of life along with variable balance disorder. Read more...

AAV-Mediated Clarin-1 Expression in the Mouse Retina: Implications for USH3A Gene Therapy | Gene Therapy News | Published: February 16, 2016

Astra Dinculescu, Rachel M. Stupay, Wen-Tao Deng, Frank M. Dyka, Seok-Hong Min, Sanford L. Boye, Vince A. Chiodo, Carolina E. Abrahan, Ping Zhu, Qiuhong Li, Enrica Strettoi, Elena Novelli, Kerstin Nagel-Wolfrum, Uwe Wolfrum, W. Clay Smith, William W. Hauswirth.

The ongoing challenge to develop an animal model mimicking the effects of Usher III (in particular, the loss of vision) makes it impossible for researchers to test therapies in development using conventional means. This study has important implications for designing gene therapy studies in a rational manner, to produce Clarin-1 in the correct cell type and at levels that mimic its natural production. Read more...

CLICK HERE TO READ ALL ARCHIVED SCIENCE NEWS


ADDITIONAL RESOURCES

The Usher Syndrome Coalition provides a number of other resources for families with Usher syndrome including:

The Usher Syndrome Registry and Family Network
The Usher Syndrome Coalition website
blog on Usher syndrome issues
Facebook and Twitter
An effort to increase NIH awareness of Usher syndrome

You are welcome to take advantage of any and all of these resources.


QUESTIONS?

CALL US

Toll Free: 1-855-998-7437 (1-855-99-USHER)

Videophone: 1-631-533-9621

EMAIL US

Krista Vasi, Executive Director: k.vasi@usher-syndrome.org

Nancy O'Donnell, Registry Director: n.odonnell@usher-syndrome.org

Julia Dunning, Events Coordinator: j.dunning@usher-syndrome.org


ADA INFORMATION HOTLINE

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If you'd like assistance understanding how the ADA applies to your situation, ADA Specialists are available Monday through Wednesday and Friday from 9:30 AM to 5:30 PM.

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Usher Syndrome Coalition 
2 Clock Tower Place, Suite 418
Maynard, MA 01754
1-978-637-2625
http://usher-syndrome.org/

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